Navigating the Maze of Chronic Illness


Having a chronic immune/inflammatory illness is like being in a maze that you never asked to enter. That’s the best analogy I can come up with to explain the journey. You know going in that it’s not going to be easy. There is no clear, straightforward path from symptom to diagnosis to cure: it’s a lot of twists and turns, hitting walls and retreating, trying again another way. There isn’t even a cure, in fact…but there is still a goal: remission.

Basically, remission is when the disease goes into a less active state, so your symptoms subside enough for you to resume a more “normal” life. You still have the disease, so you still have to take all your medication and be careful to avoid anything that might trigger a flare (which can still come at any time, even without such a trigger). Remission can last anywhere from days to decades, and there’s no way to tell which it will be. But it’s the best we can hope for, until they find a cure.

A normal maze can be a challenge, but at least there’s a beginning and an end, and a sense of accomplishment when you get through it. The maze of chronic illness is much harder. I’ve been working with a great team of doctors to figure out what is going on and how to manage it for five years now (not to mention the years before that with doctors who did not help at all). Just as I think we’re headed in the right direction, we hit a wall… And what’s more frustrating is that it’s not because I made a wrong turn. I follow all my doctors’ orders, take my meds every day, rest when I should, exercise when I can, etc. I’m doing everything I’m supposed to, and then a new wall just appears.

 

Sometimes it takes the form of an unbearable side effect from the medication. Sometimes it’s a new skin reaction to something…or to nothing. Or swelling. Or pain. Or an insurance issue that keeps me from getting my medication when I should. I’m already going in slow motion because of the fatigue, but when a new wall hits, it’s like I’m moving backwards.

In a maze, that’s exactly what you do: when you hit a wall, you go back where you came from, until you find a different turn you can make. That’s literally what happens when trying to navigate the maze of chronic illness. In the years I’ve been working with my current rheumatologist, we’ve gone through a cycle of diagnoses within the autoimmune arthritis family: psoriatic arthritis, spondyloarthropathy, rheumatoid arthritislupus, undifferentiated connective tissue disease, rheumatoid arthritis again, lupus again, Still’s disease and now sarcoidosis, which is not technically autoimmune but is still an inflammatory immune system disease (all that in addition to the fibromyalgia and a slew of other conditions). With each new diagnosis comes new treatment and new hope that this will be the one to bring me to that glorious yet elusive remission.

In the beginning, we may refuse to even enter the maze. We ignore the symptoms for as long as we can, in denial that it could be anything serious. But they don’t go away like they should, and we just don’t feel “well” – it could be pain, fatigue, dizziness, changes in sleeping patterns, bathroom usage, weight or all of the above. We can’t see straight, walk straight or think straight. Something is wrong. We don’t know what, and we don’t know why…but we have to find out what it is. Unfortunately, that’s not as easy as we think.

Admittedly, many inflammatory/immune diseases are by nature difficult to diagnose: they are constantly changing, there is a great deal of overlap with other conditions and they are often invisible. Still, we go to our doctors with the hope that they will do their jobs: to diagnose, treat and cure us. At a minimum, we expect them to listen to us, to care and to try. Sadly, more often than not, they don’t. Instead of guiding us down the proper path, they become obstacles to our progress by rushing through a visit and dismissing our concerns. Before finding my current team, I spent four years hitting wall after wall as numerous doctors said it was all in my head – all because they could not be bothered to look any further.

Alas, even finding a good doctor doesn’t necessarily lead us on a clear path to diagnosis and treatment. Symptoms vary from person to person within a given disease, and even from day to day (or moment to moment) within the same person. Quite often when we’re able to get an appointment with the appropriate specialist, the rashes have cleared up and the swelling has come down, making us once again look like nothing’s wrong. While it is good that these symptoms have subsided, it does not help our doctors understand and navigate this diagnostic maze with us. After a few such instances, I started taking pictures whenever something swelled or there was a new skin irritation, just in case it was gone by the time I got to see my doctor. My Show and Tell album continues to grow, and has helped my doctors figure out which path to follow on several occasions.

collage of photos of visible swelling and rashes on a woman's body

After hitting so many walls and making so many U-turns, it’s easy to feel stuck in the maze, to feel there is no way out. There are surely times when we want to give up – to stop going to a dozen medical appointments a month, stop taking 20 pills a day, stop being a human pin cushion. At my current stage, when it seems like none of this is helping enough, it’s even easier to think that way. Someone asked me recently how I handle it all, how I keep going. I tried to think of a really clever answer, but all I could come up with was “I just do.” I think about what would happen if I actually did stop all that, if I stopped trying to get better. The likelihood is that I would get much worse, much faster. Best case scenario, I wouldn’t get any better, I would just stay like this. And that is unacceptable. I don’t want to stay like this; I can’t not do everything I possibly can to feel better.

So I keep going – in circles if I have to, but at least I’m going. And I keep hoping the next pill or the next injection will be the one to bring me to remission. That’s the most important thing through it all, the only way to ever get through this maze: I keep hoping.

This post originally appeared on Float Like a Buttahfly.

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